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Happy 4/21- Why I Didn’t Write About Medical Cannabis Yesterday

by Janet Jay April 21, 2022
written by Janet Jay
On a white background with cannabis leaves around the bottom and right edges, text reads "Happy 4/21-- why i didn't write about medical cannabis yesterday, janetjay.com"

Happy 4/21! I didn’t write about medical cannabis yesterday, even though I wanted to. Why? Texas, mostly.

On a white background with cannabis leaves around the bottom and right edges, text reads "Happy 4/21-- why i didn't write about medical cannabis yesterday, janetjay.com"

Listen, I’m happy that my sister in Seattle can walk down the street and buy anything she wants. (Really! I am truly thrilled at the spread of legalization, not being sarcastic.). But even though I’ve been in constant joint and nerve pain since I was 15, I can’t. I’m so glad my colleague’s state has such a thriving medical cannabis program that she’s fighting over things like insurance coverage. But there is no medical cannabis program in my state whatsoever. (“Medical marijuana” with no THC doesn’t fucking count. CBD alone does zilch for some people.) This means that anyone with chronic pain who wants to use marijuana for pain relief has to chance telling their doctor about it, and possibly losing that doctor, or not telling their doctor, technically breaking their ‘pain contract,’ also potentially losing that doctor.

I didn’t write about medical cannabis yesterday because it doesn’t matter if it helps your joint pain or muscle tightness more than anything else. Opiates or marijuana?  I certainly hope they don’t help you in different but still significant ways, because from everything I’ve heard from people in states like mine, it usually comes down to choosing one or the other.

Even if cannabis helps you take fewer opiates, it doesn’t matter. We’re not in the land of logic anymore. Even when doctors refuse to treat people who use medical cannabis, they no longer attempt a medical argument for the decision. Because there is no valid argument for keeping marijuana Schedule 1. That means “it has a high potential for abuse, no currently accepted medical use in treatment in the United States, and a lack of accepted safety for use under medical supervision.” Under current federal law, marijuana is more dangerous than cocaine, meth, or oxycodone.

Sure.

Vintage "Nancy" cartoon with her sitting in bed, saying "I've never been so frustrated in my whole life!"
“Nancy” panel from Ernie Bushmiller’s Nancy’s Aunt Fritzi Ritz

I didn’t write about medical cannabis yesterday because depending on what version of it you prefer, it’s a felony with a lot of jail time in my state. Prefer vaping or edibles to ruining your lungs by smoking flower? According to Austin law firm Guest & Gray: 

“Any edible or THC vape, no matter how small, is a felony in Texas. One THC cookie = felony. One THC vape cartridge = felony. It’s not like regular plant marijuana, where they have to show a usable quantity either. Any amount is enough; one crumb from your pot brownie = felony. Less than one gram is a state jail felony, which is the same penalty Texas has for meth, cocaine, and heroin. That’s right, the geniuses who wrote our state’s weed laws made pot brownies the same penalty as crack. Great job, guys! For an edible over 1 gram but less than 4 grams, the offense is considered a 3rd-degree felony. That means you are looking at 2-10 years in prison for EDIBLES.”

Prefer concentrates/dabbing? Also a straight felony! All forms of THC concentrates are illegal in Texas. And of course anything involving the mail is, you guessed it, a big honkin’ felony. That’s not even starting on county-by-county legislation.

Texas policy in a nutshell: Vape? Go to jail. You want some extract? Go to jail. One gummie? Right to jail.

Republicans are mostly to blame for this– Texas’s ridiculous laws are almost entirely based on Greg Abbott’s political maneuvering and bootlicking. But Dems have plenty of blame here too. Biden promised to– and could at any time!– change this landscape completely. It would be a massive win for Dems and polling shows widespread support on both sides of the aisle. Sooooooooo…

Snip of twitter post by 
Holding Biden Accountable @WaitingOnBiden
Happy 4/20! Today is the 456th day that Biden has refused to fulfill his cannabis campaign promises, which are still up on his website, hand emoji pointing at snip from website:
BIDEN
 HARRIS 
DEMOCRATS Decriminalize the use of cannabis and automatically expunge all prior cannabis use convictions. Biden believes no one should be in jail because of cannabis use. As president, he will decriminalize cannabis use and automatically expunge prior convictions. And, he will support the legalization of cannabis for medical purposes, leave decisions regarding legalization for recreational use up to the states, and reschedule cannabis as a schedule Il drug so researchers can study its positive and negative impacts.
6:00 AM - Apr 20, 2022. Twitter Web App
What the actual fuck, Dems.

I didn’t write about medical cannabis yesterday because in places like this, it can bite you in the ass. Someone I know was recently sent to a cardiologist. They mentioned cannabis use because they had read that it could affect heart rate, and the doctor noted it in their chart. When a different doctor saw it, that person ended up losing the pain management doctor they had been going to for half a dozen years. Despite saying it in confidence. “Always be fully truthful with your doctors” is usually the correct approach, but I don’t have the luxury of thinking it’s always true.

I didn’t write about medical cannabis yesterday because I don’t know what my future holds. I have to keep my options open. 

Happy 4/21. I’m truly happy that the landscape has changed so much and that most people can now access this vital medicine. But there are a whole lot of people still out here suffering. 

April 21, 2022 0 comment
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chronic painLife with chronic painPersonal experience

6 Crucial Questions People With Disabilities Should Ponder Before Getting a Dog

by Janet Jay April 19, 2022
written by Janet Jay
Silhouette of a person in a wheelchair about to give a treat to a dog jumping up, another dog beside him. Text reads "6 CRUCIAL QUESTIONS People with Disabilities should ponder before getting a dog, janetjay.com"
Silhouette of a person in a wheelchair about to give a treat to a dog jumping up, another dog beside him. Text reads "6 CRUCIAL QUESTIONS People with Disabilities should ponder before getting a dog, janetjay.com"

For people with disabilities, getting a dog can be a life-changing experience. In addition to company and love, caring for a dog can get you out of your own head and off the couch at times when you wouldn’t or couldn’t otherwise. Owning a dog is a great way to meet new people and a great excuse to get out in the world (we’re talking pets here, not service dogs). But that doesn’t make dog “parenting” easy, cheap, or something you should get into without fully thinking through all aspects of the choice. For disabled people, getting a dog is even more of an undertaking!

If you’ve got disabilities or chronic pain and are thinking about getting a dog, ask yourself these 6 crucial questions first:

  1. Can you afford it? (money)

Two smallish terrier mutts, one brown wearing a sweater, one black and white, sit in front of the "i love you so much" wall in South Austin
Pretty cute, huh? But they took this trip without me. I was in too much pain.

Dogs are fucking expensive… and that’s if they’re healthy. (Ask me about my dog Kismet and her two hip surgeries! Or just buy me a cup of coffee, hah.) Food is expensive (ask me about my other dog Arrow and the prescription food she has to eat now because her butt got too chonky!). Toys and grooming and everything else is, you guessed it, expensive. One thing some people leave out is travel: can you afford to board a dog, or take it with you? (Boarding dogs costs more than you think it will!) Are you willing to stay home if things don’t work out?  You should also consider breed restrictions in your area: even if your dog is a mutt, if they’re primarily what landlords consider to be a ‘dangerous’ breed, you may pay more in rent or even lose out on housing options.

There are definitely ways to get by on less money! This isn’t to say that no person can get a dog unless they have thousands in their pocket to share. There are free and reduced cost shots and vets. And the cost of a dog is usually spread out over a long period…

Except when it isn’t. Emergency vet visits WILL happen. Your dog might need hip surgery, like mine, or get cancer, like my friend’s dog. How much money do you have / are you willing to spend? Realistically, can you swing a surprise thousand-dollar vet bill? 

2. Can you afford it? (pain/health)

I put pain after money because, shitty as it is, the former can influence the latter. The more money you have, the worse your pain can be. That’s because it allows you to buy toys and equipment and even pay someone to walk the dogs when you’re hurting too bad.

It’s not just money, though: if you have family members or a partner, or even helpful neighbors, they serve the same purpose. They can be sort of a release valve for when things are just too bad for you to take care of anybody but yourself.

If it really is just you without support, look in the mirror and really think about whether your disabilities fit with getting a dog. Are you comfortable making a commitment to walk a dog at least every other day for the next ten+ years? Even when you feel awful? Do you have the spoons to devote to taking care of another living creature? Even on bad days?

Kismet has been chasing tail since day 1

3. Can I accept that dogs have innate personalities I can’t train out of them?

I got both my dogs as puppies and trained them the same way: the older one, Kismet, ended up smart as a whip, devious, a leader, a little bossy. She can even do a bunch of tricks! The younger one, Arrow, is dumb and sweet and wants to be everybody’s friend and is happy to be a follower. She can sit. And sometimes stay.  (There is one trick I’ve been working on for her entire life that she has yet to figure out, and she’s nine now.) They’re both crate-trained and better behaved than a lot of dogs I know. But no matter what I do or how hard I try to train it out of her, Kismet is always going to bark at someone that comes to the door.

A black and white spotted dog named Kismet stands in high grass and smiles up at the camera
Kismet grinnin’ in the grass, pic by Janet Jay

So I ask you: are you prepared to deal with behaviors that fall within the normal range of dog behavior, even if those are unwanted behaviors?

As a friend who lives in a big city and got a puppy last year put it, “Your dog has its own personality and tendencies. Bringing a puppy home doesn’t mean you’ll be able to fully ‘customize’ a dog’s personality. You cannot program the dog. You can be a friend to dog, and caretaker to dog, but the dog is his own being.  And you will never be completely in control of this other sentient being, no matter how good your training is.” Can you handle that? People with disabilities should understand more than the average person that getting a dog who’s in good health now doesn’t mean things will stay that way.

Bringing a puppy home doesn’t mean you’ll be able to fully “customize” a dog’s personality. You cannot program the dog. You can be a friend to dog, and caretaker to dog, but the dog is his own being. And you will never be completely in control of this other sentient being, no matter how good your training is.

4. Can a dog fit into my life, routine and living situation?

Two smallish terrier mutts, one brown and one black & white, in front of Lady Bird Lake and the Austin skyline behind them
Dogs are a great excuse to get out in the world! This is at Lady Bird Lake here in Austin.

Is there a place in your world for the dog to be? People with disabilities getting a dog should know beforehand what to expect, especially if choosing a puppy or a large breed with a lot of energy– don’t be like the couple i know from high school who got a great dane puppy in a two bedroom apartment– but it’s important for everybody to ask.

  • Do you have kids or roommates?
  • How often do you travel for work?
  • Is there a yard, or are you prepared to stand outside with them multiple times a day while they go to the bathroom?
  • How stable is your housing? What will you do if your housing situation changes unexpectedly?
  • Is someone available to take care of the dog temporarily if you are hospitalized or too unwell to care for the dog? What if you die? 
  • If a future partner is allergic to dogs, or you have a baby, or you move and it’s hard to find an apartment that lets you have a dog, what will you do?
  • Under what circumstances would you relinquish this animal? If you realize that your dog is NOT thriving in your care, would you be able able to shelve your feelings and rehome it? No matter how much you love your dog, if their needs are unable to be met, can you find it in you to give them the life they deserve?

5. Am I getting the right dog for me, my life and my disabilities? 

Breeds and individuals have enormously different requirements: there’s a dog to match just about any lifestyle and activity level, but not all owners consider this. There’s a huge difference between getting a puppy of a large, energetic, wilful breed and getting an older smallish dog. It’s important for people with disabilities getting a dog to be aware of both size and potential behavioral issues.

How are you getting your dog?

I asked a friend who runs a rescue org what new owners should ask themselves, and she replied:

New owners should ask: ‘Am I obtaining a dog ethically? Does this purchase or adoption align with my values? Am I educated on issues around dog welfare in my community? Is this dog already spayed/neutered, and do I have a plan to do that?’ 

If you’re getting a puppy from a rescue org, do you realize and are OK with the fact that you truly have no idea or guarantee what it will grow into? The “breed” on the card is nothing but a well-intentioned guess. One friend’s mom was told that their puppy would be 50 pounds, and it ended up over 100! On the flip side, purebred dogs are still dogs and can have characteristics you don’t want. They aren’t insurance against the wrong choice. 

Divided into quarters: top left is very small black adn white puppy, reading "KISMET," below it a pic of the same dog as an adult facing the camera. Top right is very small brown puppy, reading "ARROW," and the same dog as an adult below, facing the camera. janetjay.com at bottom
Look how much these guys changed from what they looked like when I first got each of them!

Have you considered an older dog?

Older dogs are actually perfect for people with disabilities: they’re already house trained, they’re already grown so you know what size you’re getting, and they’ve already gotten past the “constant zoomies, mischief and infinite energy” puppy days. Puppies are very cute. But odds are that there is an older dog sitting in a shelter near you who would be a perfect fit.

6.  Am I dedicated to being a good owner?

Two dogs, one brown wearing an argyle sweater and one black and white, standing on a rock in front of a creek

Do you understand what a dog needs from you? 

How much do you know about dog training? Are you willing to learn more? How much patience do you have? How much time do you have to devote to training and petting your pup? Ready to wake up at 5 AM with a puppy and stand outside, praying for them to poop? Prepared for them to chew on the furniture legs, tearing around the house full of energy for literally years? Everything you do with a puppy has ramifications later on. If you don’t train them well, the next ten years aren’t going to be much fun for either of you. 

Speaking of… puppies turn into dogs, and dogs turn into old dogs. Are you ready for that, emotionally and financially?

Still in? Well hot Diggity Dog!

This story might give you the impression that dog ownership is hard. That’s because it is! But if you know what you’re getting into, a dog can be an incredibly helpful, rewarding aspect of your life. Through some really tough and lonely times, mine have kept me company and laughing. And taking care of them sometimes got me moving on days when otherwise I would have been on the couch. So ask yourself these questions… and then go check out a local shelter! (If you’re in central Texas, Austin Pets Alive is an amazing group. That’s where I got Kismet!)

All photos except puppy photos by Ken from KenWalksDogs. He’s great if you are in the Austin area and need a dog-walker!

 

April 19, 2022 3 comments
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chronic painComplementary medicineGuest PostsLife with chronic painMental healthMental HealthTips & Tricks

Guilt-Free Self-Care Tips for Introverts

by admin February 17, 2022
written by admin
Pink background with hand holding coffee cup reading "busy introverting," text: Guilt-free self care tips for introverts, janetjay.com
Pink background with hand holding coffee cup reading "busy introverting," text: Guilt-free self care tips for introverts, janetjay.com
Bottle of clear hand sanitizer with label on it that looks like the famous marquee at el arroyo with text that reads "turns out i was social distancing the whole time"

Guest post by Melissa Howard of Stop Suicide

There’s a wide range of self-care tips for introverts out there, from putting down devices and practicing mindfulness to learning how to say no without feeling guilty. For individuals who have social anxiety, chronic pain, or just need to have quiet alone time, there are several methods of care to choose from.

It’s important to think about your specific issues before creating a routine or plan. For instance, if you’ve been wanting to go back to school but are having trouble with the in-class aspect, take a look at some online programs and set some goals.

Here are a few self-care tips for introverts to put into practice:

Adjust your goals to work for you

Sometimes it’s necessary to make some adjustments to your plans in order to accommodate your physical or mental health, which is why online degree programs are such great options. Not only can you work on your own time when your schedule allows, you can pursue an associate, bachelor’s, or master’s degree from an accredited school within the comfort of your own home. Check out the various programs offered virtually, and make sure the school of your choice offers competitive tuition rates so you can lock in the best deal.

Note from Janet: make sure to check out their disability services office too! The support that the disability office at my university provided made all the difference.

Man on a bicycle cycles past wall with "NO" painted on it, a valuable skill for self-care for introverts

Learn how to say no

Whether it’s for school, work, or family obligations, sometimes introverts have a hard time saying no without feeling guilty. Even if you have a good reason to decline, it can create discomfort or anxiety at times.

Learning how to say no when you can’t give your time or energy to someone else is important, whether it involves your professional or your personal life. It is possible to do so while remaining empathetic and kind, but it takes a little practice.

Give yourself permission to say no even when it’s hard. This is a crucial step in creating boundaries, which is important for introverted individuals. 

Appreciate your own company… guilt-free

While you’re learning to set boundaries, you may find that it’s a confidence booster. Finding self-esteem through your own actions can be extremely rewarding and can help you appreciate yourself a bit more. This means you can look for new hobbies that are perfect for people who like to spend time alone, try some solo workouts, or spend time with yourself without the negative feelings that sometimes come with being alone. You might try complementary treatments like meditation and yoga–which can be beneficial for a well-rounded health regimen–or learn something new, like a foreign language. Set up a spa night at home and pamper yourself for an act of self-care that helps you feel better both physically and mentally.

Woman practices self-care for introverts sitting reading under a tree

Get outdoors

While you’re practicing new hobbies or getting in a workout, consider integrating them with some outdoor time. Getting outside can boost your mood and can help you feel more connected to the world. (Especially if you’ve been avoiding social situations recently due to the pandemic!) Take your dog on a walk through the neighborhood, plant a garden, set up a small workstation on the back porch, or gather some supplies to practice your hobby of choice at the park. Not only will this help you find a good mental/physical health balance, but it also benefits your sleep quality. 

Practicing self-care sometimes requires an open mind. Start small and try a few different things that you think might work for you; if they don’t, move on to another technique. If you’re also living with chronic pain or physical mobility issues, seek support from your primary care physician before trying a new activity.


Guest post by Melissa Howard, founder of Stop Suicide, which provides info, articles, resources, how to contact helplines, and more. “Every suicide is preventable. After losing her younger brother to suicide, Melissa Howard felt compelled to create Stop Suicide. By providing helpful resources and articles on her website, she hopes to build a lifeline of information. Melissa attended school at University of Colorado, Colorado Springs and currently works as an executive assistant.”

Do YOU have what it takes to write a guest post for janetjay.com? I make no money from this site so if you can get paid elsewhere, I say godspeed. But if want to write about anything relating to pain, I’m always looking for new ideas! HMU on social media or at pain.chronic.words.iconic@gmail.com

February 17, 2022 0 comment
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Disability in FilmDisability in MediaPersonal experienceRecommendations

Murderball: Massacring Misconceptions

by Janet Jay January 17, 2022
written by Janet Jay
background clip art of two quad rugby players, text: "Massacring misconceptions, Murderball, the quad rugby doc that changed the way i thought about disability, janetjay.com

Murderball: Massacring Misconceptions

The quad rugby doc that changed how I thought about disability

Wanna watch Murderball? Stream it legally on Philo or Fubo.tv, using your library card on Kanopy, or for free on this random (I’m sure illegal) site here. Youtube also has multiple full copies of it up.

Here’s a TL;DR up front: If you’ve never seen Murderball, go watch Murderball. It’s a hell of a sports saga about quad rugby (murderball) teams, international rivalries, and competition at the highest levels. It’s also a human story about people who have been through some shit... and come out the other side with pride, self-confidence and the desire to slam into others in an armored chair. The quote below, from a many-year veteran of the sport, sums it up best:

Text on yellow background: "The critics got one thing wrong: Murderball doesn't dispel myths and stereotypes.  It takes big fat bites out of those sugary sweet, pathetic images and stereotypes, chews 'em up and spits 'em out. It's not a magic pill that will make pity and stereotypes go away, but it is quite simply the best film ever made on disability.  It amazes me that these filmmakers were able to render such an honest portrayal of living life from the seat of a wheelchair.  Somehow, either by the sheer exposure to the people or by some innate understanding, directors Henry Alex Rubin and Dana Adam Shapiro "got it," and this film is a joy to watch, especially the way we did, with family and about 12 other quads. This movie is funny. It is sad.  It is fiery, fast, frank, explosive, sexy, tender, loving, and the action is bone-jarring, just like quad rugby, aka Murderball. - Ed Hooper"
Read Hooper’s full review here.

Killing it on the court

What even is the game of murderball (aka Quad Rugby)?

Quad rugby, originally called murderball, is a sport for people in wheelchairs who don’t shy away from, well, anything. It’s a weird mish-mash: played on a basketball court, with rugby-like interaction, using a volleyball and end zones like a football field.

“The chairs look like tricked-out bumper cars, with bucket seats, safety harnesses, angled wheels, and grills to protect the feet. When they roll over, the guys go with them,” explained the film’s producer Dana Adam Shapiro. 

The rules go like this: four players on a side, ranked on their mobility on levels from .5 to 3.5, depending on their ability to move their upper bodies. Team mobility rankings cannot exceed a total of eight, so teams have to find a balance. “The most mobile players handle the ball,” said Shapiro. “The low-pointers act as human speed bumps.”

The documentary Murderball, disability theory and me

Promotional image of the DVD case for the film Murderball with the tagline "dream. believe. achieve."

Murderball came out in 2005 and in some ways, it really changed my life.  Today, between my freelance journalism, my work with the US Pain Foundation and my writing here on janetjay.com, I’ve spent the last few years pretty firmly in disability spaces. So it’s not easy to wrench my brain back to where I was in 2005. I was only beginning to learn to advocate for myself and constantly struggling with the idea of what qualified as “disabled,” or even just “disabled enough.”  I wasn’t in a wheelchair so it didn’t apply to me, right? With my life-warping invisible disability I didn’t fit in with the able-bodied, but there wasn’t a home for me in disability spaces either. (At least that’s how it felt.) And I certainly didn’t have anybody I could ask who had been through something similar.

Off the Court

Murderball is the opposite e, like the paraplegic and quadriplegic members of the quad rugby teams featured in the film. (Now one of the highest-grossing documentaries of all time!) But there’s more to it than what’s going on on the court. The film spends a lot of time showing the daily lives and routines of these men (and they’re all men), talking about how life has and hasn’t changed for them, in terms of health, sex, family, sport, and how they’re perceived. 

“One thing that’s cool, when you’re watching [Murderball] with an audience: People first start watching the movie, they see us as, ‘Oh my God, these guys are in wheelchairs.’ And then, it becomes, ‘Oh my God, these guys are in wheelchairs playing a sport.’ And then, finally when it’s over, they’re not seeing the wheelchairs anymore, they’re just seeing us as athletes.”

Seth Hogsett, Team usa

Abilities, Assumptions, and Attractions

Misconceptions swirl around these guys, mostly about what they’re capable of (answer: just about everything you’re capable of). The kind of life-changing accidents that the stars of Murderball underwent certainly affected their lives and how they grew and evolved as people, but those accidents don’t change who a person is at their core. These are guys who are athletes, who are thrill-seekers, who found their way through the darkness of their medical trauma into a new life that they have to navigate.  If you’re an adrenaline junkie before breaking your back trying to jump a dirt bike, you’re not going to be thrilled with playing cards after your accident. Murderball– quad rugby– is for THAT kind of paraplegic.  

Front shot of Mark Zupan wearing headphones and using a quad rugby wheelchair
Mark Zupan training

“The guys we got to know get up earlier, exercise longer, eat healthier, travel more, get hotter girlfriends, and most of them can kick our asses,” said Rubin. One of the most… let’s say “engaging” parts of the film is a frank discussion of sex, from how people beat around the bush (pun not originally intended) about the question of whether someone can get an erection to different strategies for getting it on despite physical limitations.  (However, they also talk about playing up their limitations, “acting pathetic,” to get women. Which is… sad and gross and scuzzy. But some people are like that, sadly, and these are just people.)

…And weighing risk

Unfortunately, quad rugby isn’t for everyone. It’s dangerous– these players are absolutely risking further disability. And only certain types of disabilities qualify to play. And chairs are ridiculously expensive. Coaches spoke of having to turn away many who were inspired by the movie but didn’t qualify to play. 

Head shot of Mark Zupan smiling in front of the USA olympics logo
Mark Zupan being interviewed

Deconstructing (Some) Defaults

How the film came to be, and the ways it changed the views of its able-bodied filmmakers, is an interesting story. First, editor Dana Adam Shapiro stumbled over a newspaper piece discussing the rivalry between two local quad rugby teams. I think many people would react the same way he did: “The article was pretty mind-blowing for me, because I had thought all quadriplegics were like Christopher Reeve — very mild-mannered and weak and fragile. Not playing this violent game and driving and having sex. I guess in my ignorance, I didn’t think quadriplegics would talk like that. And all of those stereotypes just started falling away.” 

“The premise sounded horrible,” admits Rubin. ”If there was a documentary about disabled people on TV, I’d want to switch the channel to CSI. But you meet these guys and they just completely subvert every cliché you’ve ever had about someone in a wheelchair. They listen to speed metal, they drink Jägermeister, they pop Viagra, they have hot girlfriends, they play poker, they call each other gimps and cripples. And Zupan, he’s a filmmaker’s wet dream. That guy is so brutally honest, there’s not a fake bone in his body.”

Newly paralyzed Keith sees the condition of the bike he crashed
One of the most moving moments in the film is when newly paralyzed Keith Cavill sees the condition of the bike he crashed

The action sequences are all Murderball but the heart of the doc is its characters and their struggles. “Quad rugby was this great MacGuffin that got you into the room and created this structure and was very visual,” explains Shapiro, noting that there is only about nine minutes of actual sports footage in the 86-minute finished product. “But, at the end of the day, you know, the story is hard to tell about what it’s like to break your neck.” 

Living A New Normal

One of the most compelling threads in the film is that of Keith, a newly paralyzed 20-something in the process of examining his new world and its limitations.

For me, the most moving bit had nothing to do with murderball at all. It was the scene where Keith comes home from the hospital for the first time, up the new ramps to the front door, into the room he’s now stuck sleeping in because he can’t go up the stairs to go to his own bedroom.

It’s a quick moment, blink and you’ll miss it, but it’s the most honest in the film: Keith looks around, obviously haunted by who he used to be, as his family tries to be optimistic. And he can see them trying, and he tries to be optimistic for them, but he breaks, clutching for perspective but breaking the way anybody who went from healthy to a serious disability knows too well:

“Preach all you want– it could have been worse– but what’s normal will never be the same.”

keith Cavill, murderball

For him, as for many others, quad rugby promised normalcy, competition, masculinity. It was one shining hope, a lifeline among the new limitations that would define the rest of his life. And it’s obviously not just the sport, it’s the people. It’s the community and the understanding, both of the limitations of quad life and the desire to still take risks and experience thrills.

We don’t all have disabilities that let us have these experiences, but it’s impossible to watch and not feel that yearning, that passion, that drive to continue to compete and achieve physically. If you have a disability, this film and these characters will resonate. If you don’t, it will teach you something. Either way, it’s a hell of a film that I cannot recommend highly enough.

Text: "Massacring misconceptions: murderball, the quad rugby doc that changed how i thought about disability, janetjay.com" on yellow, blue, green background with images of mark zupan and another player while playing

When I started, this post was going to be a fun quick recommendation of a great documentary I remember loving. As I got sucked back into it, I started thinking more about masculinity, normalcy, assumptions about sex, and the gross way that the dudes in this film go about “acting pathetic” to get women.

There’s been some fascinating work done by academics analyzing the film over the years since its release, and, well, I’ve ended up with a whole other post a-comin’ on that topic.

So while you watch, keep in mind questions like “what is normal,” “what is manly,” and “what other questions should these dudes be asking themselves once in a while?” Are their social choices and actions, especially towards women, justified? Understandable? Scummy? Manipulative? A fair response to assholish cultural assumptions about sexual inadequacy? All these things and more? I honestly have mixed feelings on the whole thing, and I’d love to hear your perspective.

All the visuals from the movie I use in this post are thumbnails that were released as part of the official press pack. though there’s no way to actually contact them anymore for actual permission / full quality images (trust me, I tried)

January 17, 2022 0 comment
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Gift Guide For Chronic Pain — UPDATED FOR 2021!

by Janet Jay December 14, 2021
written by Janet Jay
On a background of stars text reads "Gift guide for chronic pain: updated for 2021, janetjay.com"

Christmas is coming! (And my birthday too… just sayin’) and that’s got me thinking about all the little gadgets I continually recommend to my friends. Some of this stuff took me 20 years to learn about (theracane, where were you all my life?!) and some are old standbys that can help a surprising amount. Here’s a gift guide for chronic pain patients full of guaranteed wins– mostly items I currently own and use myself. (Of course, if you have chronic pain yourself and this stuff sounds rad, I say treat yo’self.)

Full disclosure: I am posting these options with Amazon affiliate links, because why not, though if you have a local business you can buy from I very much recommend and prefer you go there instead. I’ll also just leave the link to my Patron here, just in case anybody would like to buy me a cup of coffee.

NEXT UP: Updated gift guide for chronic pain patients in the hellyear 2021!

Standing Strong

 For me, standing is one of the most difficult, painful things there is. For instance, cooking is really hard for me, given the amount of standing it requires. But once I got a gel anti-fatigue mat, it made the process easier. And it doesn’t have to be cooking of course: does the person you’re shopping for stand up to do stretches and PT while they watch tv? Do they have a standing desk of some sort? Whatever it is, grab one of these mats. They’re not all black and ugly, either (though of course, some companies had to cock that up).

View from behind of an african american man sitting at a desk on a yoga ball seat, stretching his arms
There are a ton of slightly different varieties of these yoga ball seats… if you have one you love, let me know!

Desk the halls (sorry, sorry)

Speaking of desks… almost everybody can benefit from making their workspace more ergonomic, especially for people who found themselves suddenly thrown into working from home last year.

(What makes a desk ergonomic? Here’s some great info from the Mayo Clinic and a super simple piece from the NHS called “How to Sit At Your Desk Correctly”.)

A good, supportive desk chair is the biggest thing, but I don’t know enough about the options to recommend anything. Luckily, there are tons of other cheaper options that can help too.

  • Yoga ball for sitting and stretching
  • I’ve always wanted to try one of these yoga ball seats, too
  • Ergonomic wrist and mousepad (there are a hundred different versions of these, of course)
  • Laptop stand for your desk to get it up to eye level
  • A good, ergonomic lumbar support cushion (this is another item where there are a thousand slightly different versions)
  • If your desk is like mine,a keyboard on top is too high to be ergonomic. Grab a little add-on keyboard tray and bring it down to your level.

What do you use to make your desk more ergonomic?

Vibrate at your own frequency

I love my little (well, bigish) back massager. To get it out of the way first: yeah, you can use it for, uh, “me time.” But for someone in chronic pain, that’s just one of a number of helpful uses (…and an ENTIRELY different type of blog post). Obviously they are good for tight muscles, but I also use mine on my temples, scalp and occipital bulge (the bumps where your neck attaches to your skull) during the worst of my migraines.

There are tons of different models with different variations: these hardcore Theraguns, which I’ve never tried but have a friend who swears by. The best hardcore “personal massager” brand is the Hitachi Magic Wand, which is strong enough that it has therapeutic uses outside of getting off.

I personally have this off-brand massager, but I really like that you can change out the “business end” (wow, there’s no way to say that without sounding gross)… anyway, like you see in the pic to the right, it’s got all these different heads on it that you can switch out depending on what you’re using it for. (I wish I could embed this video of it, as it’s a damn party groove.)

Heat it up

Back buddy heating pad

All heating pads are not created equal: so-called “moist heat” is a lot more effective for pain than the dry heat of an electric blanket or something. Bed Buddy is a brand of heat pack filled with organic materials that you throw in the microwave for a couple of minutes. In my experience, they last for years and are massively helpful for sore, tight muscles. They even offer them with built-in aromatherapy, if that’s your jam. 

Stretch it out

Woman helping man stretch using resistance bands

There are all sorts of exercises you can do with resistance bands— if you’ve done physical therapy recently, they may have sent you home with some. But if nothing else, they’re fantastic for stretching. That’s why I recommend everybody have at least one resistance band– when you’re feeling stiff, it really helps you stretch out tight muscles. 

vive calf stretcher
Vive Calf Stretcher

The last time I went to physical therapy they had this little plastic thing called a foot rocker that made stretching tight calf and leg muscles SO easy that I went home and immediately bought one for myself.

It also came with a spiky ball that is absolutely perfect for working out knots in your feet– when my plantar fasciitis is bugging me, this is the first thing I grab. (It also includes an app, which I didn’t know about until three seconds ago when I went looking for that link.)

Grab it

the HMS Grabber reacher being used by a person in a wheelchair to pick up keys
The Grabber in use

A couple of years ago my L5-S1 herniated and i was taken to the hospital screaming, and eventually underwent an emergency laminectomy. I was sent home with a corset brace that supported my back but didn’t let me bend over (not like I would have been able to bend over without it, because of the pain). As goofy as it looks, a little grabbermajig like this turned out to be incredibly helpful.

Every little bit of independence is worth it. This article, “Three Things To Consider Before Buying A Grabbing Tool,” goes through different options that specialize in long reach, firm grasp or great value. I ended up buying a “featherweight” model that did everything I needed it to.

For a fancier model with a rotating head and a bunch of other options, take a gander at this demonstration video for the RMS Grabber Reacher — the grabber is illustrated with CGI and there’s an inspiring soundtrack that swells like the moment in a Disney movie where the hero triumphantly decides to fight on the side of good or whatever.

Step it up

stepper
Woman uses stepper

Getting regular exercise can be incredibly difficult with chronic pain– no matter how much you rationally know it will help in the long term, when you’re just struggling to get through the day it can be hard to force yourself to do something that’s only going to make you feel worse in the short term. (Damn you, pain cycle!) I live in Texas, land of “nine months of summer per year,” and if it’s hard to exercise regularly, it’s way harder when it’s 100 degrees outside by 11 am.

Enter the stepper! I like to hop on it while watching something and zone out. I have the model on the left, which has stretchy resistance bands you can use with your arms, but you can also get a version that has a handle if you’re more concerned about ergonomics or need extra support. (Of course you could buy a stairmaster or a treadmill, if that’s your price point, but until I got this as a gift I had no idea that $50-$100 could buy me something that’s just as good).

Mobilize it (& work on that chi)

man lying down uses chi machine

I hate the name of these things–“chi machines”– because I feel like whatever it does for your “chi” is a lot less important than what it does for your muscles and joint mobility. You lie on the ground, put your feet in the little foot slots, and then turn it on so that it’s gently moving your legs from side to side with a swimming or wavelike motion. Note: START SLOW! This is one of those electronics where there are some really crappy knockoffs out there. The bare minimum you need is that your chi machine has a speed controller, and has soft footrests instead of hard plastic. This is the exact model I own and it’s served me well for…. eight years? Dang.

Massage it yourself

Man uses orange thera cane

For real y’all: get yourself a dang Thera cane. I’m legitimately sad that I didn’t hear about these amazing things until just a couple of years ago. A Thera cane is a plastic doohickey (technical term) that looks like the kind of old-timey exaggerated cane that would be used in a cartoon to pull someone offstage when they’re bombing in front of a crowd.

You can use it to massage out knots anywhere on your entire body, by yourself, no matter where it is. As someone who lives alone it’s absolutely invaluable for those can’t-reach knots in my shoulders.

Pro tip: you can put Icy Hot, essential oils or whatever you want on the knobs too! Seriously, the basic model and one that comes apart for ease of transport are both under $30. I just have a basic blue one and it has been a huge help to me; I can’t recommend this gift enough.

Prop it up with a lap desk

Lap desk with pillow & wrist cushions, used by someone reading book

Lap desks are important for anyone who spends a lot of time in bed or on the couch with their computer. It serves a number of purposes: it keeps your computer stable as you shift around under it, it raises it up and tilts to make the whole process more ergonomic (I particularly like models that also have a wrist cushion, like this one).

Another similar option is what’s called a lap table or bed table. It’s like a lap desk with legs; it reminds me of those trays that you see people on TV serving breakfast in bed on. Most lap desks have foldable legs that allow it to transform into a more normal lap desk, though without the cushioned bottom. There’s a huge range of options, from the most simple— a horizontal surface with folding legs– to the extremely complex, with cool materials, adjustable angles, integrated fans, and a hundred other little cool tweaks.

Soak it

shea butter moisturizing epsom salt

Three words: epsom salt baths. Epsom salt baths are a type of complementary medicine that actually works for me, and I know other people who swear by it (I recommend this stuff so often that the people in my chronic pain group are probably sick of hearing about it.). If you have super tight muscles and achy joints, it can really make a difference. On one hand, I have found a ton of personal relief from epsom salt baths and have had medical professionals explain how they work… on the other hand, I just this minute discovered that there’s not a ton of evidence actually supporting its efficacy for pain relief.

All I can say is that I can personally tell a noticeable difference in how I feel getting out of a regular bath vs an epsom salt bath, but take my opinion with a grain of [epsom] salt (sorry, sorry, i’m trying to delete it). Anyway, regular epsom salt does the trick, but you can also buy versions scented with lavender, eucalyptus, and other calming scents, a special moisturizing formula with shea butter, and more.

What other stuff should I include on next year’s gift guide for chronic pain?

I know I’m almost certainly forgetting nine million great doohickeys, thingamajigs and whatchamacallits. Leave a comment or give me a shout on social media and tell me what I need to add to the gift guide for next year!

December 14, 2021 0 comment
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chronic painHealthcare / MedicineHow To

How To Use Pain Scales To Explain Your Pain (Even Though It Sucks)

by Janet Jay November 12, 2021
written by Janet Jay
text reads: how to use pain scales to explain your pain, janetjay.com

How To Use Pain Scales To Explain Your Pain (Even Though It Sucks)


Fucking pain scales. If you’ve ever sought treatment for pain, you’ve heard this more than once:

Ten means the worst pain you’ve ever experienced. Or else ten means the worst pain imaginable. Unless it means “bad enough to go to the ER.” Or just “very severe.”  My new favorite is “Unspeakable / unimaginable. Bedridden and possibly delirious.” That seems closest to the gist of it.   There’s even a visual scale for kids with faces! 

The Wong-Baker FACES Pain Scale, with cartoon faces whose expressions supposedly reflect pain levels
Pick a face, any face

The pain scale and its inescapable fuckery

Pain Scale 1-10 index with extensive elaborative text by Prohealth.com

All those things are completely different, of course. I mean… go look at that sentence again and think about how far apart some of those are. I’ve never given birth, had a kidney stone, or had my arm cut off without anesthesia, but I can imagine how badly those would hurt. If I truly went by ‘the worst pain you’ve ever felt,’ my entire scale would have changed after my L5-S1 disc herniated. Does that mean that what was my 7 was now a 5 because the scale was stretched?

“There are lots of problems that come with trying to measure pain,” Professor Stephen McMahon of the London Pain Consortium told The Independent in 2018. “I think the obsession with numbers is an oversimplification. Pain is not unidimensional. It doesn’t just come with scale […,] it comes with other baggage. How threatening it is, how emotionally disturbing, how it affects your ability to concentrate.”

What does ‘the most pain you’ve ever been in’ really mean?

I’ve been thinking a lot about this since I saw a post by someone new to chronic pain who said that they couldn’t understand the arbitrary value of a 1-10 scale of pain.

She elaborated in a comment: “Especially when they say ‘10 being the most pain you’ve ever been in’ because yes the pain that I’m in all the time is the most pain I’ve ever been in but I always doubt that it’s a 10.” 

My response was: 

“Your instincts are right, you should lowball it.

Don’t ever say 10, because they will dismiss you. If you’re not literally on your back screaming in pain, or flat-out unconscious, it’s not a ten.

I say that not to be mean, but because I have been through this. Your normal everyday ‘worst pain’ is an 8. At MOST. That’s how you get a doctor to take you seriously.”

And don’t ever, ever, ever say it’s an 11. Unless you’re Spinal Tap.

And don’t ever, ever, ever say it’s an 11.  Unless you’re Spinal Tap.

Pain Scale 6-12 from Hyperbole and a Half featuring comedic faces exhibiting exaggerated pain
Only Hyperbole and a Half is allowed to go past 10. And even HER 10 is “being actively mauled by a bear.”

Turns Out Doctors Care About The Pain Scale Numbers, Not The Words

Here’s what drives me crazy: the doctors who make us do this don’t know or care about the technicalities. A ten is a ten is a ten, I’ve discovered, no matter what the ‘definition’ happens to be. Unfortunately, as someone who lives by words and who is very literal-minded in some ways, that realization took me faaaaaar too long. 

A ten is a ten is a ten, I’ve discovered, no matter what the ‘definition’ happens to be. Unfortunately, as someone who lives by words and who is very literal-minded in some ways, that realization took me faaaaaar too long. 

The Pain Scale: Choosing The Best Version For You (Sorry, They All Suck)

The original McGill Pain Scale / Index Questionnaire, 1975
The original McGill Pain Scale / Index Questionnaire, 1975

Some people like to write their own pain scales, and there are a whole bunch of other all-slightly-different scales that do one thing or another.  For instance, the McGill Pain Index, created in 1975, doctors ask patients to select from among a list of sensory, affective, and evaluative descriptors for their pain, and assign a number describing their intensity. I’ve filled out this form so many damn times, even in my own medical journey over the last 20+ years (good lord, it’s really been that long hasn’t it).  But it’s still a subjective measurement that’s treated as objective and forced onto a numerical scale that truly doesn’t describe the situation.  

Things I Wish I’d Known About the Pain Scale

I wish someone had told me at the start that my affect was being judged and noted every time I came in (“affect” in this case means the visible reaction a person displays toward events, often described by such terms as constricted, normal range, appropriate to context, flat, or shallow).

I wish I’d known that the numbers on the scale matter more than the definitions that go along with them: even if a poorly-worded definition traps you at a 6, if your pain feels more like 7 out of 10, you should go with 7.   

Pain Scale 1-10 by Famous Artists
So why not use art! I’m feeling a bit Picasso today, how about you?

Describe your pain (seriously, actually describe it)

But honestly it’s better to just get done with the number and move on to actual description. And that’s the right word, too: don’t just say your pain is bad. Describe how it’s bad. Describe the effect it has on your day-to-day activities. Describe the actual pain as best you can: not just “it hurts” but “it burns, it stabs, it clenches.”

Don’t just say your pain is bad. Describe how it’s bad. Describe the effect it has on your day-to-day activities. Descirbe the actual pain as best you can: not just “it hurts” but “it burns, it stabs, it shocks, it cramps.”

My chronic pain started when I was fifteen. I wish, at the start, that I had the words to describe just how different my pain was at night than it was at 10 AM when I might have a doctor’s appointment. My affect at 10 AM and my affect at 10 PM are, well, like night and day. But just saying “it gets worse as the day goes on” doesn’t really communicate that. Turns out most pain gets worse as the day goes on, but not to the extent mine did, and it took time to figure out how to get that across.

An Updated Pain Scale using Roadkill by Holly Scott
My new favorite pain scale right here, using roadkill. By Holly Scott, @curseofmen

Pain Scales: An Imperfect, Objective Measurement of a Variable, Subjective Experience

And that’s the crux of it: all these things are trying to objectively classify something that resists that categorization. There are so many types of pain, but even if you only have one (“only”), pain isn’t neat and tidy. So as you answer pain scale questions, keep the bigger picture in mind. Stress out less about the technical wording of the scale you’re using and more about how you’re going to get across the information you need to get across. Think of the pain scale as an intro to a conversation that might really be useful to both you and your doctor, rather than as the be-all-end-all.

Or just scream “BEES!!!” and hope they get the joke. 

Funny Improved pain scale pain index 1-10
BEES!

What do you do when asked to rate your pain on a scale of 1-10? Are there any pro tips that I completely neglected to mention? Leave me a comment or shout at me on social media and let me know!

November 12, 2021 0 comment
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chronic painChronic pain IconsDisability in MediaPersonal experienceStuff (physical items)

Chronic Pain Icons: How Selma Blair and Her Cool Canes Support Me Too

by Janet Jay August 29, 2021
written by Janet Jay
Silhouette of woman with cane and arm in the air, text: I am disabled. i fall sometimes. I drop things. My memory is foggy. And my left side is asking for directions from a broken GPS. But we are doing it. And I laugh and I don't know exactly what I will do precisely but I will do my best. Selma Blair, janetjay.com"

How Selma Blair and Her Cool Canes Support Me Too

Let’s talk about representation,  something that has always seemed like it… wasn’t for me.  I’m a white, upper-middle-class kid from the suburbs, and none of my issues are immediately visible. I have an assortment of mental health problems and ADHD and you can’t see that either (well, except for all the fidgeting and doodling). My physical disabilities– fibromyalgia, migraines, a fucked up spine, a sprinkling of CPRS– are usually invisible, except when the pain forces me to use a cane or a wheelchair.

While I celebrate the idea of people wanting to see themselves represented in the world around them, to be able to get Share-a-Smile Becky’s wheelchair inside the damn Barbie Dream House, it’s just never felt like it applied to me. Representation for my invisible pain would be, um, an action figure lying in the corner of a music venue, using her purse for a pillow, trying to last to the end of a set. That’s not a fun playscape. Not a lot of smiles to share there.

Representation for my invisible pain would be, um, an action figure lying in the corner of a music venue, using her purse for a pillow, trying to last to the end of a set. That’s not a fun playscape. Not a lot of smiles to share there.

I don’t keep up with fashion and celeb culture and red carpet anything. I don’t have cable television and I literally can’t even tell you the last award show or red carpet I watched. It’s just not a part of my life. But when i saw a picture of Selma Blair on the red carpet of a 2019 Oscars party wearing this absolutely stunning, silky, floaty, flowy gown and a badass cane, it absolutely blew me away.  

Blair posted, “When my life flashes before my eyes, I want this portrait by @markseliger to be front and center.”

Staying Sexy: Cool Canes Edition

Selma Blair stands in 3/4 profile wearing a black one-piece bathing suit and holding a black cane with a tan handle

The cane didn’t distract from the outfit: the cane fucking MADE the outfit. She rocked it head to toe– and as somebody who really struggles with staying sexy and staying myself past whatever mobility aids I may have it was so inspirational.

In my experience mobility aids desexualize you. I can walk around as a moderately attractive person and see people check me out or flirt with me… but put that butt in a wheelchair and any potential interest just evaporates. Which is one reason I’m truly thrilled to see her embracing the cane as an accessory that can be sexy. (Or not, as you choose, just like everything else.) As Blair said, canes should “fit right and look cool… It can still be chic. You shouldn’t have to sacrifice style.”

B&W photo of Selma Blair wearing a black suit, white shirt and black tie, and black cane
Image by Cass Bird for Vanity Fair

Getting Personalized Support

Blair ended up walking the red carpet at the 2019 Oscars with a badass patent-leather cane, monogrammed and featuring a pink diamond. “I have met so many people on Instagram who have said that they were always ashamed of their cane,” said Blair. “You want to still be part of the living, not a shuffling person people get out of the way for because they’re queasy. A cane, I think, can be a great fashion accessory.”

There are a ton of cool canes on the market (and so many other awesome products that make life with a disability easier). But there’s a lot of ugly, cheap crap too. It takes people like Blair being loud and proud about their use of and need for awesome canes to help convince businesses that there’s a market for them. Not all of us have designer friends who will monogram our canes for us! But we still want to look awesome going out on the town.

Limping towards acceptance

So thanks, Selma, and keep on kicking ass. We need more examples of head-to-toe outfits where a cane is a plus rather than a minus. She didn’t plan to be here, like all of us, but she has tackled her challenges with grace and drive. By being open about her diagnosis and struggle, she has done an incredible service to those of us with invisible disabilities.

Sometimes the best support is seeing the details of someone else’s fight. Cane or not, we all need someone to lean on. Blair’s story may help prop you up during a bad time! I’ll stop using cane puns, but in all seriousness: Blair’s story is deeply inspiring, and I am truly grateful that she has chosen to publicly share such a personal journey. I’ll close with a quote that I find really inspiring:

In researching this post, I discovered that Blair has filmed a documentary about her struggles, titled “Introducing Selma Blair.” I can’t wait to see it! Here’s more info about it; Blair also recently posted on Instagram to introduce the project. Do you like disability-related documentaries? Check out my post on Murderball and how it changed how I thought about so many things.

August 29, 2021 0 comment
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So Much More Than a Headache: What’s Your Migraine Routine?

by Janet Jay July 1, 2021
written by Janet Jay
So much more than a headache: what's your migraine routine? janetjay.com
Turquoise background with clip art of a head with a brain with an arrow pointing to the brain, text: "So much more than a headache, what's your migraine routine, janetjay.com"

I have been coping with chronic migraine disease since my teens. But now that I’ve got a migraine routine down, it makes the whole situation a little bit more manageable. Here’s what a day with a migraine looks like for me and how I deal with it.

When I have a migraine, the people who know and love me can tell just by looking at my eyes (occasionally even before I’ve realized it!). I can see it too: I slow down. I squint a little..You can just see in my face how much extra effort I’m having to put in just to do the most basic stuff.  That’s only one of the reasons you want to get your migraine routine down pat before the worst hits.

Partners of people with migraines: ask them how you can help and listen to what they say! It could be as simple as a soda, a neck massage, heating up a heating pad for them, or just a couple of hours of golden silence. But you’ll never know until you ask. But I’m getting ahead of myself. Let’s go through my migraine routine.

Yellow art of torso with folded arms and exploding head. Keith Haring, Untitled, 1983
Keith Haring, Untitled, 1983

The pain is coming! Lock down your migraine routine before it hits.

Sometimes I wake up with it lurking, sometimes it creeps up on me in the early afternoon. Always, there’s a moment of recognition. I realize the light is hurting my eyes, or my thoughts are fuzzy, or I’ve been rubbing my forehead for 20 minutes without realizing it.

I immediately go take my abortive. The Maxalt will make me a little fuzzy and logy but also might be able to head the worst of the pain off at the pass. (Maybe.)

A migraine hurts in a specific way that’s so different than any other headache. It lives behind my eyes and forehead. It makes the skin on my head and neck incredibly sensitive to the touch and achy. In fact I’ve used a giant back massager thing on my temples and occipital bulge (the bumps on the back of my head) so much that the next day I woke up with near-bruises. But when it’s one of the only things that gives momentary relief, what are you gonna do?

Don’t forget to gather your migraine routine thingamajigs

I wish I had someone to rub my head and neck for me, but until then, I love my damn Theracane so much (my gift guide for chronic pain post goes into more detail about why). A dear departed friend made me a special concoction of oils I use, but it works similarly to products like Biofreeze or Icy Hot. Might be worth trying next time you’re in this spot.

I also just bought a goofy thing on a whim called a “jade facial roller and gua sha scraperi” which is supposedly supposed to fight wrinkles… somehow, idk, but I’m finding it surprisingly useful for headache times. It’s basically just the difference between “rubbing at my head with my knuckle or whatever’s handy” and “rubbing at my head with a piece of stone shaped to fit my face,” but it really does feel good on very sensitive migraine skin. For something you can get for $5 it may be worth checking out when you see one on sale.

Want more ideas for stuff that’ll make your life easier? Check out my newly updated gift guide for chronic pain! (And then shout at me on social media to tell me what I forgot to include.)

Vintage comic frame of red-headed woman on beach, crying and touching her forehead, thought bubble reading "this horrible feeling inside me!"

It’s here! Get that routine rolling

I try to find something with caffeine in it, usually a soda with some sugar in it as well, as that seems to help for whatever reason. I also take a hardcore muscle relaxant, as sometimes my always-too-tense muscles are a contributing cause and I have the tolerance of an elephant. It has the very nice side effect of also making me sleepy. If I can manage to fall asleep for a few hours, a lot of times I can kick the migraine. Don’t know why, but a nap is way more likely to kick it than the same two hours spent just resting on the couch. 

Migraines Through Rose-Colored Glasses (Not A Metaphor)

Lights go off, and on go the special migraine glasses I got in a swag bag at a migraine conference I went a couple of years ago called RetreatMigraine. They’re not cheap (though there is a money-back guarantee so you can see if they help) but they truly do make it so the light doesn’t hurt my eyes nearly as much– plus, I get to make “rose-colored glasses” jokes. I don’t know how, but I’ll embrace anything that helps me avoid that stabbing pain during a migraine. (I just bought new everyday glasses and noticed that other brands like Warby Parker and Zenni also offer lenses that block certain types of light, so depending on your particular issues & price point, that could be a better option to try.)

In a weird twist, marijuana is guaranteed to make my migraines worse. It helps just about every other aspect of chronic pain I’m dealing with! (I mean, that my friend is dealing with, as my… friend… and I live in Texas where it’s still entirely illegal, even for medical patients.) But one thing that can alert me them to a developing migraine is if I they smoke a bowl and feel worse. Bodies: they’re super weird! Some people certainly do benefit from cannabis for migraines.

At the end of the day, the whole migraine experience is a giant “throw treatments and recommendations at the wall and see what sticks” situation. Nobody can tell you what will make things better or worse for you. All I can do is tell you what I’ve learned about myself, and how.

This is my hurting-too-bad-to-put-on-makeup ‘as cute as I can be with a migraine’ shot. It’s not a good look.

Migraine Braine

After all that I’ve got brain fog from the migraine, fuzziness from the Maxalt, and a muscle relaxant hopefully kicking my ass in a helpful way. What do I do? Cancel plans, sit in the dark, and watch something on TV that doesn’t require much mental effort.

Even if I can manage to force myself to do something, I’m working at a third the speed and a quarter the mental comprehension as normal. It’s hard to explain Migraine Braine but “fuzzy,” “spacey,” “logy” do an OK job.

So Much More Than A Headache

It’s not just a headache: brain fog is real and can affect you before, during, or after a migraine. It’s hard to concentrate, hard to remember things, hard to focus, hard to really force yourself to do anything when you’re in that position.

Paying the Next Day

The day after a migraine is always rough, trying to force your brain to focus and move at normal speed when it’s the last thing you want to do. Even though words are kind of my thing, I’m coming up empty trying to describe brain fog. It’s both like and unlike so many other things.

It’s not like what your brain feels like the afternoon after staying up all night, but sorta. It doesn’t feel like being forgetful and scatterbrained, though that’s part of it. It’s kind of like everything is twice as far away from you as it should be, metaphorically, so anything you do requires an extra step. Does that make sense? Sorta? It’s the best I’ve got right now.

Somebody out there must have figured out a better way to describe this! Please comment below or shout at me on social media. How you would describe the brain fog of a migraine?

Connecting with others with chronic migraine

Attending a migraine retreat really pulled into focus for me how many people truly are debilitated by migraines, not just when they have them but in having to rearrange everything around the possibility of an attack. Some people have migraine the majority of the time; some people spend most of their lives in a dark room. I go through cycles of migraines (i wish I knew why!) where I’ll have them two or three times a week for a month or two and then it’ll subside for a while. I’ll only get one a month for a while, and then it’ll come back again, with no warning, rhyme or reason that I can come up with. I’m lucky to have a job that understands and accommodates that, because many don’t.

Migraine disease can change your entire life, but it doesn’t have to ruin it: over the last few years I’ve written multiple profiles on people with chronic migraine who are still able to live and achieve their dreams despite and through migraine disease.

My migraine routine is nothing special, it’s just how I do it. I’d love to hear what other people do when they feel one lurking in the back of their skull about to break through, or how the hell you’d put into words what ‘brain fog’ feels like. What migraine routine have YOU come up with to help you through these miserable periods?

July 1, 2021 0 comment
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chronic painMental healthPersonal experienceWeight & chronic painwriting

Chronic Pain, Weight, and The Challenge of Getting Through The Damn Day

by Janet Jay May 13, 2021
written by Janet Jay
Chronic pain, weight, and the challenge of getting through the damn day
Chronic pain, weight, and the challenge of getting through the damn day

One thing that can be really hard to communicate to people that don’t have both chronic pain and weight issues is that it’s not just about hurting all the time,  it’s about the pain taking up so much of your being, so much of your energy, and so much of yourself that you just don’t have enough to deal with other things. Stuff like anger, stuff like weight gain, stuff like frustration, stuff like anxiety–  it’s all tied in together. It’s so, so much easier to keep your temper, or to keep from complaining about something, when you don’t have 90% of your self tied up in just being there and being out in public and interacting with people like a normal human being for a little while. It’s so much easier to eat healthy food when you’re physically able to stand at a stove to cook without it causing you worse pain, when you can walk around the grocery store and choose what food looks good. Because guess what: as much as we like to Protestant-work-ethic our way into “all you need is to work hard and believe in yourself,” it’s just not true. There’s only so much a person has to give; there’s only so much energy and self that a person can bring to a day. Can you rally and push through? Of course, but can you do that every day? No, absolutely not, and it shouldn’t be something that you try to expect of yourself.

Seriously, you should read about spoon theory! Click to read the essay that started it all

Pain, Pressure, and Pizza

I love tacos!! (and pizza) Too much!
It’s true. I do.

So when, again, 90% of yourself is dedicated to just getting through the day and doing the things that you need to do,  it’s so much harder to bite your tongue, or swallow a criticism, or to say, “I’m gonna force myself to eat a salad even though I hate salads” than to just say “fuck it I’m gonna order a pizza because my life is miserable right now. I know it is not good for me but damn that moment when I first bite into it sure is amazing no matter if I’m hurting or not.” And sometimes that’s all there is in a day, when you’re hurting so bad you can’t even sit up to watch TV, when it’s just a haze of pain flowing through the days and weeks like molasses. Sometimes that ten minutes of pizza is the best moment you’ll have in the day. Few people deal with days that shitty on a regular basis. They don’t get what our lives are like.

Weight as a function of pain 

When my pain and depression and anxiety were at their worst, I gained weight. When I finally found treatments and medication that helped enormously, suddenly I had more energy to spend on exercise, cooking, and trying to change habits in the long term. And I did! I’ve lost a lot of weight! It absolutely wasn’t easy, and certainly involved willpower and tough choices, but at the same time, it’s SO much more doable than it would have been when I was at my worst. People without disabilities have a hard time with weight loss, even with the full spectrum of exercise at their disposal. Take those options away, and obviously, you’re going to have a harder time. Adding a chronic condition on top of the normal weight loss struggle completely changes the equation. (And that’s true about things other than weight: take anything already difficult and combine it with chronic pain and it’s more than the sum of the two, it’s more like chronic pain acts as a multiplier. Weight loss squared. Temper keeping to the third power. …OK maybe not but you get the point. ) Forcing yourself to exercise is one thing, forcing yourself to exercise when you know it’s going to make you hurt more in the short term is entirely another.  

It can feel like drowning to think of all the things you know you should do, and it’s even worse when you are dealing with other stuff like depression, anxiety, and ADHD on top of your pain (like somebody I know whose name is Janet).  There is a path through the worst of it, but it’s a path that those cruel fat-phobic people have never even thought about, much less had to walk. People like that fundamentally do not understand what it’s like to be you or me. They don’t know what it’s like to trudge through a fog of pain, where every single thing you do requires effort, energy, exertion, and expenditure of pain from your finite supply.

There are some pretty great free image results for "drowning"

Pain, Weight, Jagoffs, and Finding Support 

“Weight and chronic pain” or just “weight and health and the medical establishment” is a huge issue that I’ll write a larger piece on someday– there is an enormous amount of prejudice and misinformation out there about weight and health. But until then: 

Please don’t let ignorant assholes make you feel bad about your weight or appearance.  Hating on fat people is one of the few semi-“acceptable” hates left out there, and some shitty people latch onto it. It can be incredibly hard to read some dude on Reddit screaming about CICO (calories in, calories out) and how you just need to get your ass off the couch.  But it’s important to remember that most people in the world are not like that. There are people who understand. There are people who don’t understand, but who are kind and who will listen and learn with empathy. You have to surround yourself with those people and treasure them when you do find them. In some ways, that’s just part of being an adult, but it’s so much more important for someone with a chronic condition that can frustrate efforts to get out or make new friends. I would have never gotten through the last few years without the help and support of close friends who just happen to live all over the globe. When the world around you sucks, create your own world. 

 

May 13, 2021 1 comment
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biofeedbackchronic painComplementary medicinePersonal experiencescience

Complementary Medicine That Actually Works: Biofeedback

by Janet Jay November 25, 2020
written by Janet Jay
How biofeedback works

My pain started when I was 15: nobody knew what was wrong or how to fix it (I didn’t get a diagnosis or explanation for well over a decade), and we were grasping at straws. My mother, bless her, dragged me to everything she could think of to help me, even stuff like hypnosis that I wouldn’t have chosen for myself.  Over the last 20 years, I’ve tried (and retried) many more options. Some of them helped; most of them didn’t. The majority of complementary treatments I’ve tried have been an expensive way of pissing money away. But there ARE things that can really, truly help. Everyone is different, and pain is different. But here’s what helped me. 

For more info about what complementary medicine is, what it includes, and what I’ve tried, read the intro piece in this series.

Today’s actually helpful treatment: biofeedback. 

It was a huge surprise to discover how much biofeedback helped me. The idea sounds weird (to me, at least)– they hook you up to a fancy machine that measures stuff like your brain waves, skin temperature, muscle tension, heart rate, skin conduction and breathing,  and then visualizes it. The idea behind biofeedback is that by being able to actually look at something that illustrates what’s going on right then in your body, you can use that (bio)feedback to help learn to regulate some of those processes that you’re not normally aware of but may be able to bring under voluntary control– and eventually, learn to do it on your own without the need of that visualization. As the Mayo Clinic put it, “In essence, biofeedback gives you the ability to practice new ways to control your body.”¹ 

How Biofeedback works

Does it really help? Science says yes.

In 2002, a task force formed to rank how effective biofeedback is for different disorders.² Biofeedback has evidence-based support for chronic pain conditions including migraines,³ tension headaches,4,5 temporomandibular joint pain,6 and is also used for non-cardiac chest pain,7 arthritic conditions,8 irritable bowel syndrome,9 Raynaud’s disease, and other chronic pain conditions.10 There is evidence biofeedback may help related problems such as insomnia and anxiety, but often demonstrates comparable gains to cognitive behavioral therapy for these conditions. Thus, biofeedback is often used in conjunction with other therapies such as physical therapy or cognitive behavioral therapy, mindfulness and meditation.11

— Institute for Chronic Pain, “What is Biofeedback?”

“Biofeedback is a closed-loop system that translates bio-signals into audiovisual displays.” Source: Biofeedback for Everyday Stress Management: A Systematic Review.

My experience with biofeedback

One of my major problems is ridiculously tight muscles. I also have a whole mess of depression and anxiety issues, which of course makes them clench up even more. When I did biofeedback, the practitioner started out asking me to consciously relax my muscles one by one, and gave me a couple of visualization exercises to try. I could see the indicators on the screen change as my muscles relaxed, and what it looked like when they tensed back up as soon as I stopped focusing on them.

But it was the next part I found most helpful: after learning to use biofeedback to address specific surface issues, the biofeedback practitioner had me focus on deeper changes. It’s a deeply weird feeling to try to manipulate something deep in your brain and body and see a corresponding reaction to it on the screen. And then you do that over and over, to learn what it feels like without the machine’s feedback and how to address it. 

It’s really hard to explain. You’ll see a row of lights and the person you’re working with will say “see if you can get those lights to go down,” and you try thinking in different ways and all of a sudden, the light goes down. And then you know that thinking in that one particular way can help you.  I don’t know any better way to describe it than that. But I came out of biofeedback with a toolkit that has really helped me try to keep my body under control. 

A woman undergoes neuro-biofeedback treatment. (Image credit: Camogoemz, CC BY-SA 4.0 https://creativecommons.org/licenses/by-sa/4.0)

Want to try biofeedback?

Ask your medical team if they can refer you to someone with experience as a biofeedback practitioner. Because state laws regulating biofeedback practitioners vary, many are licensed in another area of health care, such as psychology, nursing or physical therapy. So it’s crucial to find someone with training in biofeedback and experience treating your particular condition. It’s also important to determine whether your health insurance will cover biofeedback (many do not) before you plan your treatment plan. 

The NIH page “Paying for Complimentary and Integrated Health Approaches” has a ton of good info and sample questions for your insurance company and medical providers to help you determine and establish coverage. 

A Caution on Woo

Biofeedback is supported by science but as it’s a relatively unlicensed field, training and treatment quality can vary hugely. Do your research. But even when you choose the best options with the most experience, you may do your biofeedback treatment at a location that offers other, less scientifically-supported treatments. For instance, my second and most recent biofeedback experience was at a location that did stuff like reiki and aura work. One time the woman who was doing my biofeedback had me lie down and, without asking, started trying to do “aura work” on me. (Again, if woo helps you, go for it: the placebo effect is a real thing, and science doesn’t know everything yet… but I’m pretty sure “aura work” is never going to be supported.) Just remember: you’re paying to be there. Don’t be afraid to speak up and re-direct whatever’s going on.

Conclusion

More and more studies are coming out about the power our minds have over our bodies. Biofeedback is a way to “hack” that power, to focus it and make it work for you. The beauty of biofeedback is that once you learn the skills, you can use them as often as you want. Instead of a treatment like massage that helps for a short period of time, biofeedback teaches you techniques that can help you better manage your pain throughout your life. (The whole “teach a man to fish” metaphor.) Some people find that biofeedback practice allows them to do more and take fewer meds. For me, it’s just amazing that my brain knows the tricks to make my body listen. 

For more information:

The Association for Applied Psychophysiology and Biofeedback

Western Association of Biofeedback and Neuroscience

International Society for Neurofeedback and Researc

Biofeedback Certification International Alliance

Citations

  1. “Biofeedback,” Mayo Clinic, Feb. 06, 2019, https://www.mayoclinic.org/tests-procedures/biofeedback/about/pac-20384664
  2. La Vaque, T., Hammond, D., Trudeau, D., Monastra, V., Perry, J., Lehrer, P., Matheson, D., & Sherman, R. (2002) Template for developing guidelines for the evaluation of the clinical efficacy of psychophysiological interventions. Applied Psychophysiology and Biofeedback, 27(4): 273-281.
  3. Nestoriuc, Y., & Martin, A. (2007). Efficacy of biofeedback for migraine: A meta-analysis. Pain, 128(1-2): 111-127.
  4. Nestoriuc, Y., Marcin, A., Rief, W., & Adrasik, F. (2008). Biofeedback treatment for headache disorders: A comprehensive efficacy review. Applied Psychophysiology and Biofeedback, 33, 125-140.
  5. Nestoriuc, Y., Rief, W., & Martin, A. (2008). Meta-analysis of biofeedback for tension-type headache: Efficacy, specificity, and treatment moderators. Journal of Consulting and Clinical Psychology, 76(3): 379-396.
  6. Crider, A. & Glaros, A. (1999). A meta-analysis of EMG biofeedback treatment of temporomandibular disorders. Journal of Orofacial Pain, 13: 29-37.
  7. DeGuire, S., Gevritz, R., Hawkinson, D., & Dixon, K. (1996). Breathing retraining: A three-year follow-up study of treatment for hyperventilation syndrome and associated functional cardiac symptoms. Biofeedback and Self-Regulation, 21, 191-198.
  8. Dissanayake, R. k., & Bertouch, J.V. (2010). Psychosocial interventions as adjunct therapy for patients with rheumatoid arthritis: A systematic review. International Journal of Rheumatic Disease, 13(4), 324-334).
  9. Stern, M.J., Guiles, R. F., & Gevirtz, R. (2014). HRV biofeedback for pediatric irritable bowel syndrome and functional abdominal pain: A clinical replication series. Applied Psychophysiology and Biofeedback, 39(3-4), 287-291.
  10. 10 Tan, G., Shaffer, R., Lyle, R., & Teo, I. (2016). Evidence-based practice in biofeedback and neurofeedback, 3rd edition. Association for Applied Psychophysiology and Biofeedback: Wheat Ridge, CO.
  11. Schoenberg, P. & David, A. (2014). Biofeedback for psychiatric disorders: a systematic review. Applied Psychophysiology and Biofeedback, 39(2): 109-35.

November 25, 2020 0 comment
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